when push comes to shove, they are my boys

So the wall is down for Matthew......and I don't really know how I feel. I guess I need to start by filling you in on what has been going on.

When I get my mind set to something, I have to make it happen. Last Wednesday, I went to Glenmont to pick Matthew up, and I went in his room to see a map he made. That was when I saw the divider and I haven't been able to get it out of my mind since then.

I called a local neuropsychologist who Matthew saw over the summer to see if she could go in to Matthew's school and observe matthew in his classroom and give me a sense of how he was doing. I wanted to know her thoughts on the divider, and how matthew was doing in his current placement.

Today I spoke to the neuropsychologist after she did a one hour observation of Matthew in 2 thirty minute blocks. As I heard her report on her observations, my heart was in my throat and I wanted to run and grab Matthew from his classroom. My emotions right now are very raw. It is a struggle to be with matthew- he spins in circles a lot recently, is often bothering his brothers, can be set off quickly over nothing, makes a lot of noises, and says a lot of the same things over and over again, and while all of this is going on, he typically is playing the song "i whip my hair back and forth" over and over again loudly in the background- essentially, it is enough to make me crazy.

however, I am his mom- this is a position paid in hugs and kisses, all while I am trying to do the laundry, get homework done, make dinner, and take care of 2 other boys. I don't have a team of therapists working with me. I don't have a classroom of aides working with me. It is just me.

I was heartbroken to hear that while the class was listening to read aloud on the carpet, Matthew was at his desk. Sure, he was "included", but if you are the ONLY one at your desk, what does that say to the others?

I was saddened to hear that the reason they were using the divider is because Matthew responds to everything and everyone and often misreads things- as the teacher said, "the wall protects him from himself". How can anyone respond to everything and everyone? But Matthew does- the sound of kids breathing, kids tapping their pencils, the clock ticking, the wind blowing- EVERYTHING in the world is a distraction for Matthew.

The wall protects him from himself.......That makes a lot of sense to me, and I want to scream and kick and cry. I hate that! It breaks my heart.

The benefit of the wall, was that Matthew was having fewer confrontations with peers- I would counter that he was having fewer interactions with peers, and therefore fewer confrontations.

I want them to help Matthew- teach him to recognize when he needs time in a quieter space- teach him when being behind a "wall", real or otherwise would help him to to function.

I want there to be a plan to help him gain social skills. I want the staff to help him grow and to get as much as possible out of his school time.

It isn't enough that Matthew is spending his days at school. I have to know what he is doing, and I have to trust those who are caring for him. I have to be able to trust that they are caring for Matthew and pushing him to his limits socially, emotionally, and academically. I feel like each of these areas are not being planned for effectively right now, and maybe not for the past month or so.

It is exhausting to be so on top of everything for Matthew. I wish I had known more about what was going on for Matthew. I don't even feel like I knew what questions to ask, but I do know that we owe Matthew more than what we have provided for him, and I am hoping that we can have a CSE meeting in the very near future so that we can address all of Matthew's needs. This may include having a quiet space created for Matthew, where he can be taught to go when he needs a break to learn or focus. It may mean that we plan to meet more often to discuss our plans for Matthew. It may mean a lot of things. I know that Matthew's team is a smart team of dedicated professionals, and I know that they care for Matthew a lot. I am committed to working together to give Matthew the best, but first I have to cope with the emotions I am feeling and refuel my tank so that I can effectively advocate for matthew.

so much going on

Life at the Bloom house has been somewhat status quo recently.We are having our ups and downs, some days are easier than others, but for the most part, we are finding our way and it has been nice to have all 3 boys home together for the past month.

We are getting used to and enjoying having our new respite workers. Peggy comes to be with Matthew on Saturdays- they spend time together, play ball, and she is a wonderful support to him. Having her come allows David, Jacob and I the ability to get a break from Matthew's intensity. We can grocery shop, hang with friends, or just be home and it can be quiet for the 3 of us. Matthew truly depends on structure, and the slightest change in routine can make it hard for him to continue. He doesn't react to the change with a tantrum, however, when there is too much change going on, he is likely to tantrum over something else because the change has been hard for him to handle.

David is enjoying having a respite worker on Monday and Tuesday nights. Joceyln is truly wonderful. She understands David and appreciates his quiet nature. When he is over the top bonkers, Jocelyn has learned to help David calm down. She reads with him, they build legos, she enjoys being with him, and he LOVES her after just 2 weeks.

I am currently waging battle on two fronts.
1. I am looking for a psychiatrist for Matthew who I trust and respect. His current psychiatrist is not someone I have ever felt understands me, but like most things with Matthew, he is caught between two worlds- the world of children with psychiatric needs, and the world of children with developmental disabilities. The local psychiatrists feel like due to Matthew's IQ he needs to work with a pschiatrist who understands children with developmental delays. The only psychiatrist who works with children with developmental delays is the one we are currently seeing, so it is a catch 22.

2. I am once again feeling torn between supporting my son and silently trusting the school district. Since last year Matthew has sat behind a half wall in his classroom, so he can best focus without distractions or distracting other children. As I have been evaluating Matthew this year, I realize that he often does not want to go to school, and I have to agree I would not want to go to school to sit by myself all day. I would feel very disheartened sitting alone on one side of a wall. I met with his teachers and whole team a few weeks back and asked that they remove the wall. Now more than 3 weeks have gone by and the dividing wall is still there.

In my opinoin, if Matthew needs to be alone in a classroom to learn, he is not in the right setting. Every person who walks into matthew's room- parents, kids, teachers, adults, sees him alone on the side of a wall. This can't be good for his self esteem.

A week from today I will be meeting with Matthew's team and the Chairperson for the Committee on Special Education for his school. I feel passionately that i have to ensure that this wall comes down so that we can accurately assess what Matthew needs and how we can best help him, without ostracizing him or making him feel alone.